A Hard Day, a Handmade Blanket & a Little Wink From God

We’ve had a busy week in Beckham’s world—another orthopedic appointment, his first physical therapy session through First Steps, and our very first Spina Bifida Clinic appointment.

Some of the updates were encouraging. Some were honestly kind of funny.

And some were much harder for me to process.

So, here’s the latest on our sweet boy.

Orthopedics: Cast #2

On August 27th, Beckham had his first cast removed and his second cast applied.

And Beckham did amazing.

He never shed a single tear.

Mom, on the other hand, was significantly more bothered by the experience 😂

I knew logically that the little saw they use to remove casts is designed to be safe, but apparently my nervous system did not care about logic. Watching someone take a buzzing saw to my baby’s leg made me incredibly anxious.

Beckham, on the other hand, couldn’t have cared less.

He was perfectly content as long as his pacifier was periodically dipped in his favorite medical delicacy: Sweet-Ease.

For anyone unfamiliar, Sweet-Ease is essentially a sugar solution that can be given to infants to help calm, distract, and reduce discomfort during short medical procedures.

At one point, while the nurse was cutting off his cast, she looked at him and said, “Most babies are crying by now.”

But not Beckham.

Just happily sucking on his sugar-water paci while Mom internally panicked.

A few completely unsolicited tips if your child ever needs serial casting:

1. Bring lotion. The dry, flaky skin underneath the cast is no joke.

   
   

2. Bring toenail clippers. If you haven’t been able to easily access their toes for a week, you may discover that your sweet little baby has grown actual talons.

   
   

3. Prepare yourself for the smell. 🤢😂

I’m not exaggerating when I say the rotten-cheese smell coming from Beckham’s little toes was impressive. Baby wipes didn’t touch it. Hand sanitizer didn’t touch it. Even soap and water struggled.

Medical motherhood is so glamorous.

Anyway…

The exciting news was that Beckham’s orthopedist was extremely pleased—and honestly seemed a little surprised—by how much his foot had corrected after only one week of casting.

Originally, we anticipated approximately four weeks of serial casting. But after seeing his progress, she said we may be able to get away with only another week or two.

At his next appointment, we’ll also measure and fit him for his AFOs.

An AFO, or ankle-foot orthosis, is a medical support device worn around the lower leg and foot to help maintain proper positioning. Once casting is finished, Beckham will need to wear his AFOs for at least half of the day to hopefully help keep his foot from turning inward again.

We also discussed whether we should brace only his left foot—the one currently affected—or use AFOs on both feet to help prevent abnormal positioning on his right side as well.

Ultimately, we decided to go with bilateral AFOs.

…And now for the part of this update that is incredibly embarrassing for me to admit.

But I’m going to share it anyway.

Because one of the reasons I started this blog was to be honest about what life with a medically complex child actually looks like. And part of that means admitting that there are growing pains when you’re learning new equipment, new procedures, and new ways of caring for your child.

Sometimes you even make a mistake.

And mistakes can still happen even when you literally work in medicine 🤦🏻‍♀️

And Then Mom Ruined the Cast…

Fast-forward two days.

ONLY two days.

It’s Saturday, and I decide Beckham desperately needs a bath.

I had successfully given him a bath with his first cast. I wrapped the cast in a large Ziploc-like bag that I had acquired during our NICU stay, taped it around his thigh, and put only a small amount of water in the tub so his legs weren’t actually submerged.

It worked brilliantly.

He got to enjoy a semi-normal bath, he was clean and happy, and not a drop of water touched his cast.

Naturally, I assumed I had mastered this.

Narrator: She had not.

This time, I did essentially the exact same thing—except for the actual bag I used.

And I swear this is where I failed.

I had only one of the bags I used during his first bath, so this time I had to use a different kind.

When I took Beckham out of the bath and removed the plastic bag, my stomach dropped.

Water had somehow snuck in around his thigh and soaked into the soft lining underneath the plaster.

I may have said a few choice words to myself that won’t be repeated on this blog.

I immediately knew we couldn’t just leave wet padding sitting against his skin underneath a cast.

In my mind, we had two options:

Go to the ER and have them remove it.

Or figure out whether we could safely remove it ourselves.

I messaged his orthopedic doctor, and thankfully, she walked me through how to safely soak and remove the cast at home.

So that’s exactly what we did.

She also reassured me that because Beckham’s foot had responded so well to the first week of casting, he would be okay without the cast until our already-scheduled appointment on Thursday.

Which made me feel significantly better.

Until now.

I’m writing this on Monday, and his foot has already started turning inward again.

And seeing that makes me incredibly sad.

We made so much progress in such a short amount of time, and watching some of that correction seemingly disappear just as quickly is hard.

It also makes me anxious about what his orthopedist will say Thursday and whether his AFOs will ultimately be enough to maintain the correction we were able to achieve through casting.

For now, we wait.

And needless to say, Mom has officially retired from attempting baths during serial casting.

Sponge baths it is.

First Steps: Beckham’s First Physical Therapy Session

On a more exciting note, Beckham also had his first therapy session through First Steps last week!

We met his physical therapist, and we already love her.

She spent the first visit assessing Beckham’s strengths and areas where he may need some extra support, and then showed us exercises and activities we can incorporate throughout the week.

One of her biggest recommendations was lots and lots of tummy time.

She also noticed some tightness in his upper extremities, so we’re working on gently stretching his arms above his head and opening and stretching his hands.

Another area we’re working on is reaching and grasping.

She explained that around three to four months, babies typically begin intentionally reaching toward and grasping toys.

Beckham isn’t doing that yet.

He will look at toys and follow them with his eyes, but he doesn’t seem particularly interested in reaching out and grabbing them.

So we’re working on it.

She encouraged us to hold toys close to his face and within easy reach, and even gently stroke the backs of his hands with the toy to encourage him to make contact with it and eventually reach and grab.

It’s such a simple thing, but this is one of the things I already appreciate about early intervention.

Instead of simply waiting to see whether Beckham develops a skill on his own, we’re learning little ways to intentionally encourage those skills throughout our normal day.

Our First Spina Bifida Clinic

And then came today.

Beckham had his very first Spina Bifida Clinic appointment.

It was an early morning. We had to arrive at the hospital by 7:30 a.m. for his bladder and kidney ultrasound before heading to clinic, where we would see urology, developmental pediatrics, and social work.

Because of the early morning and trying to get everyone out the door on time, I didn’t catheterize Beckham before we left.

By the time we arrived, it had been approximately five to six hours since he had last been cathed.

I knew his bladder was probably going to be extremely full.

And I was already anxious about it.

As soon as we were called back for his ultrasound, I asked the ultrasound tech if we could cath him first because I was worried about how distended his bladder might be.

She explained that they actually preferred to get some images while his bladder contained urine, and then we could catheterize him afterward.

The second his bladder appeared on the ultrasound screen, I could tell how distended it was.

And immediately, the guilt started.

I should have gotten up earlier.

I should have made sure I cathed him before we left.

I shouldn’t have let his bladder get that full.

It’s amazing how quickly Mom Guilt can find you, even when you know you’re doing everything you can just to keep your head above water.

Thankfully, Beckham remained completely unbothered.

There was a little TV mounted above the ultrasound bed to keep kids entertained during their scans, and Beckham was absolutely mesmerized.

Watching him lie there completely content, staring at the screen, reduced my anxiety and guilt—at least in that moment.

And when he wasn’t watching TV, he was flirting with the ultrasound tech and flashing her his little smiles.

Once she had captured the images she needed, she had us catheterize him before taking a few additional images.

As soon as we started draining his bladder, I could tell there was an enormous amount of urine.

We used the collection bag that comes with his catheter kit, which isn’t designed to give us a precise measurement, so I couldn’t say exactly how much we drained.

But based on what we saw, I estimated somewhere around 140–160 mL.

And not that I should be proud of this particular skill, but apparently I have become way too good at estimating urine volumes.

After I started writing this post, Beckham’s radiology report came through on his portal.

The estimated bladder volume?

150 mL.

New medical mom skill unlocked.

After she obtained the remaining images, we headed to clinic.

The Conversation I Didn’t Want to Have

First, we saw Beckham’s urologist.

He quickly brought up that he was concerned about how much urine Beckham is capable of holding in his bladder and that there was some hydronephrosis on today’s ultrasound.

The final ultrasound report showed mild, grade 1 hydronephrosis of his right kidney, meaning there was some swelling from backed-up urine. Thankfully, the hydronephrosis resolved after we catheterized him. His left kidney did not show hydronephrosis.

So there was good news within the findings—his kidneys still look good overall, and the swelling improved once his bladder was emptied—but seeing evidence that such a full bladder can begin affecting his upper urinary tract is still something we have to take seriously.

And then his urologist brought up something we’ve discussed before:

A vesicostomy.

A vesicostomy is a surgical procedure that creates a small opening between the bladder and the lower abdomen, allowing urine to drain more freely and continuously instead of remaining trapped inside the bladder.

Even though this wasn’t the first time we’d heard that Beckham may eventually need one, hearing it again wasn’t any easier.

I’ve completely accepted catheterizing Beckham.

I’m okay cathing him every two to three hours during the day.

It’s part of our routine now.

But a vesicostomy?

I’m struggling with that one.

If I’m being completely transparent, my immediate emotional reaction to it is that it feels barbaric and dirty.

I know that’s not the medical reality of what a vesicostomy is, and I by no means want to offend anyone who has one or whose child has one. I know it’s a procedure used specifically to help protect children like Beckham when their bladders aren’t safely emptying.

But feelings aren’t always logical.

And right now, that’s simply where my brain goes when I imagine my baby needing one.

Thankfully, his urologist explained that we don’t have to make that decision today.

Overall, Beckham’s kidneys still look good.

For now, we will continue catheterizing him frequently and monitoring him closely.

But he explained that a vesicostomy may become necessary to protect Beckham’s bladder and kidneys if he develops a urinary tract infection, if the hydronephrosis worsens, and/or if his bladder pressures look worse on his next urodynamics study at the end of October.

And ultimately, I told him the same thing I will tell every doctor who ever cares for Beckham:

I may not want it.

I may cry about it.

I may need some time to accept it.

But if it’s truly what is best for Beckham, I will do whatever he needs.

His urologist also talked with us about other surgical options that may become appropriate as Beckham grows older and eventually wants more autonomy over his bladder care.

But honestly?

That’s too far away for my brain to comprehend right now.

So I’m putting those possibilities away for another post—and hopefully one very far into the future.

Holding Back the Tears

As soon as his urologist walked out of the room, my eyes filled with tears.

It took everything in me not to burst into full-on ugly crying.

Julian could immediately tell I was overwhelmed and reassured me that everything was going to be okay.

Side note: it is somehow equally comforting and annoying that my husband seems to process all of this 100% better than I do.

Sometimes I want him to cry with me.

I want him to be angry that our son has to go through things we wouldn’t wish on anyone.

I want some outward indication that he’s just as scared and heartbroken as I am.

Instead, he is relentlessly positive and seemingly emotionless—at least compared to me.

And as much as that occasionally drives me crazy, I also know that when I’m falling apart, he’s usually the one reminding me that we’re going to figure it out.

And that's how we balance each other.

Developmental Pediatrics

After urology, we saw developmental pediatrics, which essentially serves as the central medical provider helping oversee and coordinate many aspects of Beckham’s care through Spina Bifida Clinic

.

The doctor asked us about Beckham’s developmental milestones, reviewed all of the specialists involved in his care and his primary diagnoses, showed us his growth charts, and asked about his eating, sleeping, bowel, and bladder function.

He also examined Beckham’s strength and reflexes and asked if we had any additional concerns.

Overall, he seemed very pleased with Beckham’s development and the progress he’s making.

He did note that he wasn’t able to elicit much of a reflex response at Beckham’s knees or ankles.

For now, though, it’s something we’ll continue to follow as Beckham gets older, becomes more active, and starts attempting more gross-motor skills and mobility.

Social Work

Next, we met with social work.

It’s routine for a social worker to introduce themselves during a family’s first clinic visit to make sure there aren’t barriers to care and to connect families with resources that may be helpful.

She gave us information about two organizations I thought were really cool: Spina Bifida Indiana and Indiana Family to Family.

Spina Bifida Indiana offers things like support groups, social and educational events, volunteer opportunities, medical financial assistance, camp scholarships, and post-secondary scholarships.

Indiana Family to Family provides information, training, and one-on-one support to Indiana families of children and youth with a wide range of health needs.

I really appreciate being given resources like these because, as helpful as doctors and medical appointments are, there’s also something incredibly valuable about connecting with people who actually understand what it’s like to live this life outside the hospital walls.

And lastly, she gave us a flyer for Spina Bifida Indiana’s annual Roll N’ Stroll event on September 19th.

And it just so happens to be held in my hometown this year.

So obviously…

We HAVE to attend!

And with that, our first Spina Bifida Clinic was officially complete.

Today Was a Hard Day

I’d be lying if I said I left today’s appointment feeling anything other than sadness, fear, and anxiety.

I held back tears as we walked out of the hospital.

I held them back again in the car.

And when I initially sat down to write this post, I thought I knew exactly how I was going to end it.

I was going to tell you that today was simply one of the hard days.

One of those days when I found myself asking God,

Why?

How did we get here?

How is this our life?

How is this our reality?

Sometimes social media makes those feelings harder.

I see babies who were born around the same time as Beckham, and my feed is filled with what appears to be healthy babies and families navigating the ordinary challenges of having a newborn.

And I want that for every single one of them.

I don’t wish medical complexity on anyone else’s child.

But there’s a particular kind of grief—and, yes, sometimes jealousy—that comes from watching other families seemingly live the version of early parenthood you thought you were going to have.

It makes that question creep back in:

Why us?

Why me?

Why Beckham?

Maybe that sounds like I’m throwing myself a pity party.

And maybe today I am.

But when I really sit with those feelings, I realize the deepest source of my sadness isn’t actually self-pity.

It’s fear.

Fear for my son.

I worry about all the obstacles he may face.

I worry about the surgeries that may still be ahead of him.

I worry about all the things he may have to work so much harder to accomplish when they seem to come naturally to everyone else.

I worry about the ways people may see him as “different.”

I worry about other children pointing, staring, or making fun of him.

I worry about his bladder.

I worry about his kidneys.

I worry about what using the bathroom will look like for him for the rest of his life.

I worry about incontinence and whether someday he’ll be embarrassed by something he can’t control.

I worry about whether he’ll crawl.

Whether he’ll walk.

Whether he’ll ever feel left out.

Whether he’ll ever look around at other kids and wonder why his body works differently.

Whether he’ll feel like his life is somehow less full because of it.

I worry about things that haven’t happened.

Things that may never happen.

And things I can’t possibly know yet.

I’m constantly fighting the urge to race ahead and grieve every possible hardship before Beckham ever has the chance to show us what his life is actually going to look like.

And underneath all of that worry is still some grief for the future I once imagined for him—and for our family—that disappeared the day we heard the words spina bifida.

When I first wrote the ending to this post, I wrote that I wasn’t going to force myself to find the silver lining today.

I was going to let myself be sad.

I was going to let the tears fall if they needed to.

I was going to give the fear a little space instead of pretending it wasn’t there.

And then tomorrow, I would pick myself back up.

I’d give myself one of my usual pep talks, put my big-girl pants on, and keep fighting, advocating, learning, cathing, stretching, doing tummy time, going to appointments, and doing everything else this sweet boy needs from me.

That was supposed to be the ending.

But then God sent me a little wink.

And I don’t know how else to describe the timing except divine.

A Little Wink From God

After we got home from Beckham’s appointment, Julian walked down to the end of our street to check the mail.

That detail probably sounds completely insignificant.

But we don’t routinely check our mailbox every single day.

So the fact that he decided to walk down and check it that day, after that appointment, and found what was waiting for us feels important to me.

He came back inside carrying a white envelope-like package.

Naturally, I asked what it was.

He told me it was from a longtime family friend who shares his Basque heritage.

As he opened the package, he pulled out a beautifully crocheted baby blanket.

And then a handwritten letter.

Not a little card.

Multiple pages.

Julian began reading it quietly to himself while I bustled around the kitchen trying to pick a few things up before heading upstairs to feed Beckham.

A few minutes later, I happened to look over at him.

And Julian was crying.

Not just misty-eyed.

He was silently weeping.

And if you remember what I wrote earlier in this very post about my husband sometimes seeming almost emotionless compared to me, you can probably imagine my surprise.

I walked over and hugged him.

When he finished reading, I asked what the letter said that had affected him so deeply.

His only response was:

“You just have to read it.”

But reading it would have to wait.

Beckham was hungry, exhausted from his very long morning, and ready for a nap.

So I went upstairs, fed him, rocked him to sleep, and held him against me.

And while my baby slept in my arms, I wrote nearly everything you’ve just read above.

Including a different ending.

About an hour later, I finally laid Beckham down to finish his nap on his own and went back downstairs.

Then I picked up the letter.

And as I began reading the beautiful words written by a woman I have never even met, every tear I had held back throughout the day finally made its way to the surface.

And poured down my face.

Because somehow, on the exact day when I was consumed by fear about Beckham’s future, this letter arrived at our home.

And I’d like to share part of it.

Because it was so beautifully written—so authentic and full of love—that I could almost feel that love radiating off the pages.

And on a day when I desperately needed comfort, it gave me exactly that.

She began by telling us the story of the blanket:

“I want to share with you the story of a little blanket that somehow feels as though it was waiting all along for Beckham.

Two years ago, I crocheted this baby blanket made from alpaca. It was after my trip to the Andes. In the blanket is the lauburu, the Basque cross.

The lauburu is a beautiful symbol of Basque identity and heritage. Its four curved arms have been given different meanings over time, but I especially love the way it can represent the movement and continuity of life—the turning of one generation into another, and the idea that life continues to unfold in ways we don’t always understand when we are standing in the middle of it.

To me, it has come to symbolize family, connection, and the journey of life itself.”

She explained that when she finished the blanket, she carefully folded it and put it away, thinking she would save it for the next baby who came along.

Then her sister had a baby boy.

But something in her heart told her the blanket wasn’t meant for him.

So she made him something else.

Later, her nephew had a son.

Again, something told her no.

And once again, the blanket was put away.

It waited.

Until recently, when she was talking with Julian’s mom and asked how our family was doing.

She heard about Beckham.

And she immediately thought of the little blanket that, for reasons she couldn’t quite explain, she had never been able to give away.

She wrote:

“And suddenly I understood.

Perhaps the blanket had been waiting for Beckham.

Maybe that sounds sentimental, but I don’t think everything in life needs to be explained.

Sometimes our hearts recognize something before our minds do.

So I am giving this blanket to Beckham with love, faith, and prayer woven into every stitch.

I hope that when you wrap him in it, you will feel the love that went into making it.

I hope that it reminds you of his Basque heritage and of the generations that came before him.

And I hope the lauburu reminds all of you that life is a journey—sometimes joyful, sometimes difficult, sometimes full of turns we never anticipated, but always carrying us forward.

May it also remind Beckham, as he grows older, that he was surrounded by love from the very beginning.”

And if the beautiful blanket and those words weren’t enough, this is where the letter completely opened the flood gates.

Because somehow, this woman I had never met put words to the exact fear that had been sitting inside me all day.

But unlike the fear running through my own mind, her words reminded me that difficulty and fear do not mean there won’t also be overwhelming amounts of love and joy.

She wrote:

“Julian & Hailey, I know I cannot know what the years ahead will ask of you.

There may be days that require more courage than you think you have.

There may be moments when you are tired, frightened, or simply unsure of what comes next.

On those days, I hope you remember that courage does not mean you aren’t afraid.

Courage is loving someone firecely even when you are afraid.

And faith doesn’t mean having all the answers.

Sometimes faith is simply taking the next step when you can’t see the path in front of you.

Hold onto each other. Continue to nurture your marriage as you care for your children.

Remember that Beckham’s big brother will be walking this journey with you too. He will need your love and reassurance.

There will be difficult days, but I pray there will also be countless beautiful ones—little smiles, unexpected laughter, milestones, ordinary family moments, and memories that become precious simply because they belong to the four of you.

May God watch over Beckham.

May He watch over his big brother.

May He surround your family with love.”

And there it was.

The reminder I needed today.

Just a few hours earlier, I had sat in the car asking God, Why?

I had spent the day terrified of everything Beckham’s future could hold.

I had been thinking about surgeries that haven’t happened, milestones he hasn’t even had the opportunity to attempt yet, and hardships that may or may not ever become part of his story.

And then, sitting in my own home, I read the words:

Sometimes faith is simply taking the next step when you can’t see the path in front of you.

I don’t think that letter arrived on that particular day by accident.

I don’t think Julian happened to check the mailbox that afternoon by accident either.

Maybe some people would call it coincidence.

But I’m choosing to see it as a little wink from God.

A reminder that I don’t have to know what Beckham’s entire future looks like today.

I don’t have to figure out every surgery.

Every milestone.

Every obstacle.

Every possible outcome.

I only have to take the next step.

And maybe that’s what faith looks like for me right now.

Not being fearless.

Not pretending that I’m okay when I’m not.

Not believing that everything will unfold exactly the way I want it to.

But continuing to move forward even when I’m scared.

Maybe I can be sad about the things that are hard while still believing there will be so much beauty too.

Maybe there can be catheterizations and surgeries and therapies and doctors’ appointments…

And also little smiles.

Unexpected laughter.

Milestones.

Family vacations.

Big-brother moments.

Ordinary Tuesday afternoons.

Birthdays.

Holidays.

Snuggles under a handmade blanket.

And thousands of memories that become precious simply because they belong to us.

Because while I’m sitting here worrying about every possible version of Beckham’s future, Beckham is busy living his life right now.

Today, he smiled through his very early, very long appointment.

He stared mesmerized at the TV.

He smiled at the ultrasound tech and the doctors.

He was happy.

He was simply Beckham.

And, apparently, the little boy a blanket had been waiting two years to find.

So maybe I don’t need to wait until tomorrow to pick myself back up.

Maybe tonight I can still be sad.

Maybe I can still cry.

Maybe I can still admit that I’m scared.

But I can wrap my sweet boy in a blanket made with love, faith, prayer, family, and generations of his heritage woven into every stitch.

And I can remind myself that I don’t need to see the entire path ahead of us.

I just need enough faith to take the next step.